Perception

This is a picture of my eyes, no makeup, no photo shop just what you get when you look at me.  All my life I've known that i look different.  When I was a little girl I was teased for being different.  I didn't do well in sports due to my lack of sight and my lack of depth perception.  I was good at other things like art and making others feel accepted.  I'm not going to lie and say it didn't hurt and I didn't care because I certainly did. Lets face it we all notice when someone is different than us, its simply human nature. The thing is that no matter if I had a disability or different looking eyes I would of been teased for something because that's just what kids do.  It is a right of passage or sorts and teasing happens in every school in every town across the world.  No matter what parents or teachers do its going to happen.  So I learned how to adapt to my environment, to get along with everyone.  I stood up for those who were like me, kids who didnt fit the mold of the popular child.  When kids would tease me.  I let them know that there unkind words had no impact on me.  As I got older the teasing stopped and the compliments started coming in.  People would tell me I had the coolest eyes.  One day a girl even told me she wished she had wicked beautiful eyes like I had.  I was dumb founded.  The situation seem to have changed over a Summer.  What I realized is it wasn't the other people/kids who had changed, it was me.  I was proud of who I was, how I looked and I carried my head high. The other kids seem to notice the change in me.   I put up boundaries and ceased to allow people to talk to me that way.   In my twenties I moved to Florida.  while searching for the new eye doctor i came across a doctor who thought I needed cosmetic contact lenses so my eyes would look normal.  It was insulting and I got up out of the examination chair, told the doctor he was insensitive and that I was alright with how my eyes looked. I promptly walked out of the eye doctors office.  Then I found myself a new doctor.   Now that I'm in my thirties, I no longer get upset when someone has an unkind thing to say about my eyes.  I forgive them for they know not what they do or say.  I can be the bigger person today.  When people ask me about my eyes and they do all the time.  I'm honest.  I have Congenital Glaucoma, I'm legally blind and I'm happy  I'm grateful for the way I am, because this is how God intended me to be. My disability has made me who I am and I wouldn't change that for anything.  My struggles with a disability have made me a compassionate person who loves her life.  My eyes are beautiful and nobody can convince me otherwise. 

Let’s be proactive!

Today I had the pleasure of meeting some very amazing visually disabled young adults.  We shared our stories with each other across a luncheon table eating chicken fajitas.  There are many degrees of visual impairment and this was evident at the luncheon table today. The degrees range from those who have partial sight and manage the task of eating quite well to those who need assistance with pesky condiment packages and placement of food on a plate for example.  My friend who joined me today who is sighted was amazed at how visually impaired folks operate.  She is used to clumsy ole me who still has a fair amount of sight and when you see me sitting without my cane, you wouldn’t know I can’t see well.  I’ll admit the first time you are around a few blind people, it changes your life.  My life was changed forever by going to the National Federation of the Blind Conference this year, but that’s a story for another post.   The part of this story that I want to share with you most of all is this.  There were three young adults there that I had the pleasure of having conversation with.  I’ll call the first young man Thomas.  Thomas was in his early twenties and has no vision at all.  He had recently been laid off from his job at a local restaurant.  His job at this local restaurant was rolling silverware.  Thomas wants a more productive, self-sufficient life and is now getting the training he needs to be a successful blind person through the rehabilitation center in Daytona Florida and the Division of Blind Services. It infuriated me that he hasn’t had this opportunity before and that even though the said restaurant may have thought they were being kind giving Thomas that job in the first place, it’s an insult.  Blind people have much more to offer this world.  Now don’t get me wrong ive been in the hospitality industry a long time and rolling silverware is part of many servers jobs and am not saying there is anything wrong with doing that task.  What I’m saying is that it’s sad that is one of the limited types of jobs a blind man has offered to him because of lack of awareness and proper training.

The second story I heard today was also a young man in his mid-twenties, who unlike Thomas had partial sight, but is considered legally blind.  I’ll call this young man Kevin.  Kevin has gone through our public school system but somehow didn’t make it to college.  So for the last four years he’s been trying to find a job unsuccessfully and living with his mother.  The thing about Kevin’s story is that neither he nor his family knew how to advocate for Kevin so that he could have the skills & training and the opportunity for funding to go to college.  Nobody came looking for Kevin to say hey there’s help out there are programs designed just for the visually disabled.  Because Kevin has sight in one eye he and his family didn’t think he was eligible for services.   Kevin has RP. Retinitis pigmentosa (RP) a degenerative eye disease which qualifies him even if he can still see.  Kevin’s story really touched me because it’s so similar to mine.  Blind in one eye, sighted in the other.  Not getting assistance until it gets to the point that you cannot drive nor do simple everyday tasks.  Shouldn’t we get the training and skills before the vision loss?  Shouldn’t we be more proactive instead of reactive?  I think so.   Luckily Kevin is now getting the training he needs.

The third person I had lunch with today is a lovely young lady I met at the NFB conference in Orlando earlier this year.  She has no sight, been blind from birth.  I’ll call her Vicky.  Vicky never graduated from High school.  She was never taught braille.  She lives with her sister and collects disability but Vicky is sick of relying on other people and doesn’t want to be a burden to her family.  So this brave young girl got a scholarship to the NFB conference.  Vicky learned as did I at the NFB conference how to advocate for herself and get the help needed to succeed.   She is finishing blind school and then Vicky plans on getting her GED.

What I learned from today is that there are many many situations like, Thomas, Kevin & Vicky’s.  Its actually more common than you think and the lack of education, training, job placement and independent living for the disabled is quite extensive.  Many people fall through the cracks, get lost in the system or never get in the system in the first place.  I’m honored to have spent my lunch hour with such determined individuals.  Hearing their stories only fuels the fire inside me to do something about it.  There is such an overwhelming need for outreach programs to find struggling people like Thomas, Kevin & Vicky.  Not only do I feel I need to advocate for myself in a world designed to fail those with disabilities but I want to be of service to those like me.  I’d love to see a system that is proactive rather than reactive.  How does that happen?  I’m not sure but I’m going to keep fighting to find a way.    

A few helpful links to assistance education, programs, organizations etc that I have found this year in no particular order of importance….as I find more resources I will tag on this blog.  Email me or post a comment if you have any questions and I’ll do my best to help you.

Division of Blind Services of Florida

http://dbs.myflorida.com/

Mission Statement: To ensure blind and visually-impaired Floridians have the tools, support and opportunity to achieve success
Vision Statement: In partnership with others, create a barrier free environment in the lives of Floridians with visual disabilities.

NOTE-each state has a similar department, search the web or contact your department of education for more info

National Federation of the Blind

https://nfb.org//

American Foundation for the Blind

http://www.afb.org/default.aspx

National Library Service-NLS

http://www.loc.gov/nls/

Through a national network of cooperating libraries, NLS administers a free library program of braille and audio materials circulated to eligible borrowers in the United States by postage-free mail.

Hadley School for the Blind

http://www.hadley.edu/

Our mission is to promote independent living through lifelong, distance education programs for people who are blind or visually impaired, their families and blindness service providers.

Perkins School for the Blind

http://www.perkins.org/

Bookshare

https://www.bookshare.org/

Accessable online library

Note-free for qualified us students.  I’m a student of Hadley which is free so I also got bookshare for free!

Jerrigan Institute

https://nfb.org/jernigan-institute

NFB-Newsline

https://nfb.org/audio-newspaper-service

FREE SERVICE TO THOSE WHO CANNOT READ REGULAR NEWSPRINT!

Obstacles

We all face obstacles throughout our lives whether we have a disability or not.  Simple fact is that life is not easy and tough things happen.  Today more than ever I believe our attitude and how we act not react to any given situation makes all the difference.  A positive attitude focused in the present is the key.  I have learned to digest a situation first before acting.  Sometimes the best action to take is no action.  Sometimes for me I have to just let things happen and be still.  This is what I am doing today.

We may not always know why things are happening for us.  And I say for us instead of to us because I believe that everything we face in life can be a positive in some way.  It may not always seem that way, but I try to look for the lesson and/or the blessing in each situation.  In many cases we aren’t supposed to know why, it’s not our business.  As long as we plan, do the next right thing and be kind to others, the universe will take care of us. 

I’m facing a rather difficult and scary personal situation today and I just wanted to share how I cope with a stressful situation.  I have tools in my toolbox today and I use them. My beloved Pause Button works every time I push it.  So today I’m pushing the pause button and letting things work them out.  I plan to keep my head up and do what I’m supposed to do.  I also find that sharing any problem with others cuts the problem down and helps me focus on whats in front of me.  I no longer try and bottle things up or handle things on my own.  I use the support  system around me.  The rest is not up to me.  Today I am grateful to have a loving support system, people in my life who always are there for me and know just what to say. 

My Vision

“The only thing worse than being blind is having sight but no vision." Helen Keller

These words mean so much to me today and after reading this perhaps you will know why.  My name is Kimberly and I have Congenital Glaucoma and Rieger’s Anomaly (scarred cornea tissue).   I was thought to be completely blind at birth.  However my Mother noticed my responses to different color and light.  Our family made our way to Kansas City's Mercy Children's Hospital and so my journey began.

My first surgery was at six months old to relocate my pupil in my good eye and by the age of three i had several eye surgeries. It was discovered i had very little sight in my right but the left eye had promise. My parents totted me to the hospital nearly every thirty days for a checkup.  In 1979 little was known about what causes my type of Glaucoma and educated doctors were few and far between. 

Fast forward 34 years,  I'm now 37 years old, live is SW Florida and this past year has been one of the most difficult years of my life.  I've had three major eye surgeries in the past two years and have become what is considered legally blind in my good eye.  

In my lifetime i have had over 20 major eye operations, faced many obstacles one encounters with having a disability and trudged through life like everyone else. In the past year I've given up driving due to my vision loss.  I've learned a few things along the way and that is to ask for help, to educate myself and to be my own advocate.  My perception is to keep an open mind, to be willing to learn and to be honest with myself and others about my experience.  I've decided that i will not let my disabilities define my existence (I also have hearing impairment).  Instead I prefer to be positive, to be accepting of life and its opportunities. I prefer to find solutions instead of dwelling on the problems. It isn’t always easy and how I handle things is always the best way to go about things.  I’ve learned that reaching out to those who are similar to me.  It is a wonderful feeling to know I'm not alone with this disability and others have much to share with me.  So when a friend suggested that i share my story on a blog, I thought it was a marvelous idea.  But I have a tendency to jump into things without thinking it through.  So I thought about it for some time and asked the advice of those closest to me and I sat still and prayed about it. Today I decided to start my blog Vision not Sight.  My hope and my vision is to share my experience, strength and hope about being a person with visual disability.  I plan to share the information I’ve obtained along my journey and to offer the world an insight into what it’s like to be me.  If this blog helps but just one person with a disability that it will have served its purpose.

I’ll close with another quote that has come to be close to my heart……..

“The real problem of blindness is not the loss of eyesight.  The real problem is the misunderstanding and lack of information that exist.  If a blind person has proper training and opportunity, blindness can be reduced to a physical nuisance.” 

 National Federation of the Blind